Doctors who misdiagnosed N.S. teen's treatable heart defect before her death refuse to take part in errors study

For a new American medical journal aiming to curb diagnostic errors and their sometimes-disastrous consequences, Jessica Barnett’s case seemed a perfect — if tragic — fit.

The Nova Scotia teenager died of a treatable heart defect after her fainting spells were repeatedly misdiagnosed, and a case study was to be featured in January’s inaugural issue of Diagnosis.

But three of the doctors who wrongly assessed the 17-year-old’s problems have rejected a request to participate in the study by sharing their “critical” perspectives with the researcher.

The Barnetts say one physician told them Canada’s powerful medical-malpractice insurer advised the doctors against co-operating with the study — even though the family’s malpractice lawsuit has long since been settled.

Another suggested the project would re-open old wounds and be unhealthy for him and the family.

We’re at a jumping-off point when it comes to patient safety and we’re going to need these heroes to lead into safer care

Tanya Barnett, Jessica’s mother, said she was “stunned” by their decision.

“I understand it’s hard to just stand up and say, ‘I made a really big mistake and someone is dead,’ ” she said. “I just think that we’re at a jumping-off point when it comes to patient safety now and we’re going to need these heroes to lead us out of this into safer care.”

It was also a setback for Dr. Mark Graber, the North-Carolina-based co-founder of the Society to Improve Diagnosis in Medicine and editor of the planned new, peer-reviewed journal.

“This is a case that hopefully would have been an example of maximizing learning, so it’s very disappointing that they’re not participating,” he said.

“I don’t really understand what happened in Jess’s case, I don’t understand how the diagnosis was missed … If we could get input from the doctors involved, we would learn a lot more about what happened and why it happened.”

None of the three responded to requests by the National Post for comment. The IWK Health Centre in Halifax, where two of them work, said simply that it could not address the situation.

Dr. Doug Bell, CEO of the Canadian Medical Protective Association (CMPA), said in an emailed statement he could not talk about whether the malpractice insurer advised specific doctors about taking part in the study, but said the organization would not normally counsel physicians on “media matters,” unless they involved ongoing legal action.

“The CMPA is very supportive of measures to improve the safety of care and does support efforts to transfer knowledge to enhance safer medical care,” he said.

For four years starting in 2002, Jessica suffered fainting spells, seizures and episodes where she lost consciousness and actually started turning blue. A neurologist suggested she suffered from epilepsy or was hyperventilating, but the family read about a cardiac condition called long-QT syndrome that seemed to match her symptoms.

I don’t understand how the diagnosis was missed

Marked by an abnormally long interval between the heart beat’s Q and T waves on an electrocardiogram (ECG), the condition causes heart rhythm irregularities that can lead to cardiac arrest and sudden death. The victims are often young, seemingly healthy people.

Despite visits to two cardiologists and repeated ECG and other tests, doctors rejected long-QT as a diagnosis, eventually suggesting the spells might even be psychological, said Ms. Barnett.

Then, in May 2007, a week before her 18th birthday and a month before her high-school prom, Jessica collapsed and died.

A review for the examiner by Dr. Joel Kirsh, a cardiologist at Toronto’s Hospital for Sick Children, concluded that a number of the tests had, in fact, pointed to long-QT, and recommended the Nova Scotia hospitals consider how “this [missed diagnosis] could be avoided in future.”

In their statements of defence to the family’s later malpractice suit, the three physicians said their diagnoses were reasonable given the information they had at hand.

One of the doctors, a Dalhousie University medicine professor, said in his response to the journal’s request that he talks about the case with his students and is “open in the discussion of the error I made in her diagnosis and the consequences.” However, he said taking part in the journal project was not in the best interests of his health or that of his patients and would probably not be “fruitful” for the Barnetts, either.

The other two turned down the request with little explanation. When father Phil Barnett approached one of them in person, though, he said the CMPA had advised the physicians to not even respond to the emails requesting their participation, said Ms. Barnett.

“[The physician] felt pressure. He said that if you don’t go along with what the CMPA wants, they drop you,” she said. “There is … a fear of the CMPA. Regardless of whether they’re visible, whether they’re at the table or not, they are there.”